Abstract 13765: A New Disease Specific Quality of Life Measure for Children and Adolescents in the United Kingdom
Background: Improvements in care for children and adolescents with congenital (CHD) or acquired heart disease (AHD) have lowered mortality rates but increased the number of survivors with morbidities related to their underlying heart disease (HD) and the treatments they receive. Quality of life (QoL) assessment has become increasingly important. The Pediatric Cardiac Quality of Life Inventory (PCQLI) is a new reliable and valid self-administered disease specific QoL measure in the United States with both patient and proxy reporting. The purpose of this study was to assess the reliability and validity of PCQLI scores in the United Kingdom (UK).
Methods: Three UK tertiary paediatric cardiac centres recruited patients aged 8-18 years with HD. Patient-parent pairs completed the PCQLI, a generic QoL measure (PedsQL4.0) and non-QoL instruments measuring behaviour (Achenbach) and self-perception [Self Perception Profile for Children/Adolescents (SPPC/A)]. Reliability was evaluated by administering the PCQLI at two time points and assessed by Spearman correlation coefficients. Validity was assessed by correlation of PCQLI scores between patients and parents and with severity of CHD, medical care utilisation, and PedsQL, SPPC/A and Achenbach scores.
Results: The study was completed by 771 patient-parent pairs. Diagnostic subgroups were CHD with biventricular repair (54.1%), Fontan palliation (15.6%), unrepaired CHD (9.6%), heart transplantation (4.5%) and AHD (16.2%). Correlations evaluating test-retest reliability were high (0.72 - 0.90). Correlations between patient and parent scores were moderate to good (0.50 - 0.68). Lower total PCQLI scores were associated with Fontan palliation and a greater number of hospitalisations, cardiac surgeries and visits to the doctor (all p<.001). Correlations between scores for the PCQLI and PedsQL4.0 were good (0.67 - 0.79). Lower PCQLI total scores were moderately associated with lower global self-worth scores on the SPPC/A (0.44 - 0.47) and with lower total competency scores, higher syndrome scale scores and higher DSM oriented scale scores on the Achenbach measures (0.19 - 0.63).
Conclusion: The PCQLI is a reliable and valid disease specific QoL measure for children and adolescents with heart disease in the UK.
- © 2010 by American Heart Association, Inc.